Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?

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  • @Annie1950 You're not alone in your sense of foreboding following front-line treatment. Fear of recurrence is cited as one of the most experienced emotions for OVC survivors.  PMH has some excellent facilities to help you. Ask your oncology team about a referral to their ACTT clinic (After Cancer Treatment Transition). It offers a range of services to support patients coming out of treatment who are NED but need support in recovery, both emotional and physical.  If that is not available to you, then ask for a referral to a social worker in their Cancer Center.  I have been meeting with one here in my local community since the end of first treatment and she has been enormously helpful to me in managing my expectations, my perspective, and maintaining some balance in my life.  And yes, please think about joining us at our Thursday live chats....a real-time opportunity to "talk" to other survivors.  To join, just sign in and click on the discussion topic Teal Thursday at 1pm EST.  
  • Annie1950
    Annie1950 Peer Support Vol
    I'm so grateful to have found this site so that I can have an opportunity to vent, question, receive advice and maybe give a little.  Thanks to all of you to have made this possible.
  • CountryLiving
    CountryLiving Peer Support Vol
    Hi @Annie1950 I too go to PM. I was transferred to the transition team after consulting with my oncologist regarding physical side effects post chemo. I have found it  very helpful for dealing with my physical concerns. I was also seeking emotional support for prior to my appts however I found the social worker unable to meet my needs. I have a friend who is an oncologist psychologist (he worked at another provinces cancer centre) who I reached out to and was able to be better qualified to support me. Not all centres offer psychologists just social workers. Continue to seek out whoever you need.
  • Hi! I’m Cheryl and I am new to this site. I was diagnosed with Ovarian Cancer in January 2019 Stage 3C BRCA neg.  Had full hysterectomy with debulking followed by 6 rounds of carb/taxol.  NED for 15 months and started second round of carbo/taxol/Avastin in September 2020. I had good response to chemo, but not NED.  My oncologist is looking to start me on zejula/niraparib in a few weeks.  I’m still on Avastin for maintenance.  Has anyone had good success on zejula? Also is there funding available?  I understand my drug plan won’t pay for zejula. 

  • Hi Cheryl,
    Some provinces will cover the cost, and sometimes the Pharmaceutical company will. Ask your oncologist about it; s/he is aware of the protocol. 
    I’ve been on Zejula for 8 months.  My Ca-125 is slowly going up, but is still within the normal range. Prior to that I had one recurrence, about 8 months after my first chemo. I’ve had no side-effects with the Zejula but had so many with the paclitaxel on my first round of chemo that it was discontinued. Best of luck to you!
  • @TealTurtle I"m so glad you found this site. We're a mighty community of over 600 from across Canada....all OVC survivors wanting to support each other.  You might try inputting the key word Zejula into the search box in the upper right of your home screen. There has been at least one Discussion thread on the subject and fairly recent, that might answer many of your questions.  HoldingOn is correct....funding for drugs differs from province to province.  You are best to discuss this, either with your oncology team or their finance navigator who can help with exploring avenues to help fund the cost of the drug if needed.  Pharmaceutical companies do provide drugs free but that is  usually within the context of a clinical trial.....and I'm assuming that's not the case for you.  Hope this helps in your decision making and wishing you every success with your treatments, whatever they may be.  I too was NED for about 15 months before recurrence but was also fortunate that there was a clinical trial of Olaparib that I qualified for and that kept my recurrence stable for almost two years.  Back into chemo again (carboplatin and gemcitabine..I'm allergic to paclitaxel) since December and so far responding well.

    Please use this forum anytime you have questions or just want to talk. We do have a live chat on Thursdays at 1pm EST that you might find helpful.  You need only sign in and then click on the Discussion Topic: Teal Thursdays..... to enter the chat.  Hope to see you there some time.
  • Hi, I am Maria and I am new to this site. Back in 2018 I had a tumor in my right ovary. I got a full hysterectomy and even my appendix was removed. The clear cell carcinoma was capsulated in the ovary so I didn’t have any other treatment beside the surgery ( my diagnosis was Stage 1A) Now 2 1/2 years later, I have a tumor in my pelvis that is too dangerous to be removed by surgery. Next Tuesday March 2nd I start my first quemo treatment ( 1 of 3) I am sad, nervous and scared to the side effects and the effectiveness of the treatment, the goal is to shrink it and get rid of any other bad cell that could be left behind. I’ll appreciate if someone can tell me what to expect, I know it is different for each person but I can use some words of encouragement. Thank you all. 
  • Hello
    depending on the drugs used, you may lose all your hair. So basically you don’t have to shave your legs and armpits for months, it’s great.  I shaved my head and wore hats all the time.  Everyone reacts differently but I had very little nausea, and only felt crappy for a few days.  Go in with a good attitude, don’t expect the worst, expect the best, it will help.  Take a good book or an iPad to pass the time while getting chemo and bring snacks.  Good luck and let me know how you do.
  • @love2run
    Thank you very much! Yes, my hair will be
    gone pretty quick. Will let you know how I do 🤞🏼🙏🏼
  • @msf72 , I had 6 treatments of Carbo/Taxol. I was extremely tired with #4, 5 and 6. So maybe you won't get too tired.  (Side effects are cumulative). I had slight nausea, but the pills they gave me worked well. I was in a room with myself and 5 other patients, and two nurses. So the nurses are never far away. 
        Wear loose clothing - maybe sweat pants and a long sleeve T-shirt where you can roll up a sleeve. I also wore a cardigan with just one arm in the sleeve. (My chemo was Dec. to April and the room was a bit drafty). The nurse can bring you a blanket. Generally, you get a steroid just before the main chemo, so you won't be exhausted that day, and you'll probably have a good appetite, I think. 
  • @Elsie13
    Thank you very much! 
  • @msf72
    Maria, I am so very sorry to hear of the recurrence, especially given you were stage 1 the first time.  That's not usual but, then again, there doesn't seem to be anything predictable about this disease.  But I'm glad you found us. Our community is close to 500 strong across Canada so we have lots of experiences to share that might help...and we're always here if you just need someone to listen.  

    Have they told which chemo drugs you'll be receiving?  Reactions and side effects differ by person and by the drug the use. For example, I wasn't able to tolerate Paclitaxel so I was given Gemcitabine instead (along with Carboplatin).  With Gem you don't have hair loss.  And, as I said, how you react differs from person to person.  I actually managed quite real nausea, now bowel issues, no hair loss....more lots of fatigue for me. Others have a tougher time with it. But by no means is it usual to have what the movies seem to delight in showing.  The real key to successful chemo is communication with the chemo nursing staff. They are there, not to just administer the drugs, but to help make the experienced as comfortable for you as possible. So letting them know if you're experiencing any discomfort is the only way they know to adjust things...and much can be done to help....slower infusions, more or different pre-meds etc.  

    If you haven't already, please go to the Ovarian Cancer Canada website and order the booklets, By Your Side and Still By Your Side.  The first is generally for someone when diagnosed, but still includes a lot of helpful information on the disease, treatment and support. The second is more focused on recurrence.  Order both the downloadable version so you can review the materials now, but also the hard copies. I  have them on my desk as a reference all the time.  And search the website beyond that. There is a wealth of information .....videos, personal stories, support help educate you.  

    As for preparing for chemo, just try to relax. As I said the staff are there to make it as easy for you as is possible.  Depending on what time and how long you'll be there, bring a meal or a snack and bring water.  Hydrating before and all through is important and, personally, I find the water in the hospitals tastes awful. Bring a smartphone or ipad or laptop and don't forget a charger in case you run it down...and/or magazines or a good book.  Wear comfortable clothing.  I like to layer a bit so I'm ok if the chemo room is cool or warm.  Track pants and tops and loose T"s are great. 

    Good luck.....I do hope it all goes well for you. Keep us posted on how you're doing and don't hesitate to reach out and let us know how we can help further. 
  • @ fearless
    Thank you very much! I will be receiving Paclitaxel 😔and Carboplatin. Just got back after picking up the medicines I need before treatments. Will let you all know how things are going and thank you again for getting back to me.

  • @Fearless - Vol Mod
    I am sorry I forgot to ask you when you said you couldn’t tolerate the Paclitaxel it is something that you could tell at the first treatment? Something that you made you sick right away? 
    I did requested to download the Still by your side bookle. Thank you 😊
  • @msf72
    You'll be just fine gal. I am one of those few who either sails through or if there is a reaction it's the worst possible. Yes, the paclitaxel issue happened immediately upon infusion.  The average does feel some level of discomfort....back muscle aching, nausea, bowel issues, a hot flush. Nothing life threatening and all quite manageable.  Sol don't worry. What I experienced was unusual, not the norm. And even then , as soon as I told my nurse they stopped the infusion and I was back to normal in seconds.  You will do just fine gal. 
  • I also had a reaction to Paclitaxol when the first drop entered my system. It is relatively common and so the nurses are prepared for it. They stopped the infusion, loaded me up with more steroids and Benadryl. They restarted it 45 minutes later and slowed the rate of infusion. I was fine after that. They did preload me with more steroids and Benadryl before each treatment and I did not have any issues after that. Just don’t be afraid to speak up if anything feels off. The chemo nurses are awesome! You’ve got this. 
  • Hello.  My name is Tammy and I am 49 years old. I went to hospital a month ago with a GI bleed and had a colonoscopy while in there.  Everything indicated that is was colorectal cancer until the biopsy came back indicating that I had Advanced Ovarian Cancer.  I was referred to a specialized hospital and have had an initial visit.  I now wait to find out the method of action. I am tired and sleep hardly at all or poorly and continue to work a physical job half days 5 days a week.  I am struggling with the wait and the reaction of family/friends as this wait persists.  It seems like they think I am normal again.  I live in fear of another GI bleed and what that means.  I do not want to be in hospital again until surgery.  I think my iron is so low ( I take iron pills) that I haven't had a menstrual cycle since Jan 2021.  I am struggling with the back pain and the not knowing of what happens next.  Any thoughts or ideas for me while I wait?
  • Annie1950
    Annie1950 Peer Support Vol
    The waiting is the worst part.  Once you're in treatment and have a path of action you'll feel less stressed than you are now.  I hope they've given you medication for your pain and sleeplessness.   I resisted the pain meds and sleeping pills but once I started taking them and getting decent rest I could look at the world with a gentler eye.
    I too was diagnosed with advanced ovarian cancer a year ago but thanks to my oncology team and surgeon am now living a relatively normal life.  I wish the same for you.  All the best:)
  • Hi @Strongwoman...welcome.   so sorry about your diagnosis.  Waiting now will for sure seem the hardest and longest.  Be assured though that the oncology team is planning for the the best possible treatment and options for you. As @Annie1950 indicated once you have a treatment plan it will be one less stressor.   Please chat with your team for sure if you have ongoing pain and sleep issues or your family doctor.   And for sure if your symptoms worsen go to the ER.  The women here have been in the same place as you in one way or another with diagnosis, or treatment, or the stress or the wait..know that we are here for you..someone with a similar story, experience and may have suggestions or answers.   Each cancer centre functions a little different...where are you living and which centre are you going to...maybe someone on this site can give you some specifics for your area.  For sure contact your team though with concerns..I hope that you get your answers and treatment you need...positive thoughts your way.  
  • @Strongwoman
    I am so sorry to hear of your diagnosis and the multiple challenges you're facing right now.  Like Annie1950 and Bluebird have said, once you have a treatment plan much of your anxiety will lessen.  I know I was  terrified when first diagnosed. I knew nothing about OVC. I knew no one who had had it.  But once I sat down with my oncologist and had a plan where he said...this is what I'm going to do, this when I'm doing it, this is  what you can expect to happen as you go through treatment and this is our goal, I felt so relieved.  At least someone seemed in control of something over which I had little.   And yes, as Bluebird mentioned, if your symptoms worsen go to ER but call your oncologist's office too.  They may have other direction for you or at the least need to know.  

    In the meantime, I've found my strength through the last four years coming from knowledge. The more I've educated myself on the disease the better I feel equipped to manage.  I highly recommend you spend some time perusing the Ovarian Cancer Canada website.   There is lots of information, videos, stories that you will find helpful.  And, if you haven't already, order the booklet By Your Side. Order both soft and hard copy.  Soft so you have it for reference immediately. Hard copy will come a bit later.  It is very helpful source of information and guidance for someone going through first diagnosis and treatment.  You can order it at

    Finally, I'm so happy you've found this community. We are almost 500 strong, across Canada, all OVC survivors of varying types and stages of the disease. While you likely have strong personal support from family and friends, there is nothing more reassuring than hearing from those who've walked in your shoes. We are here for you.  To offer our experiences, our advice,  and just to lean on if you need only to talk or vent or cry. And we laugh together a lot too.

    We do have a live real-time chat on Thursdays at 1PM EST that you might like to join as well.  Just sign in to OVd at the appointed hour and click on the Discussion topic TEAL THURSDAYS to enter the chat room.  Love to see you there.

    In the meantime, our thoughts and prayers are with you.....
  • I'm Vicki,  I was diagnosed in Februart of 2020 with high grade ovarian cancer.   I had 4 chemo sessions then surgery followed by 2 more chemo sessions.  My last bloodwork had the lowest  ca125 level since diagnosis.  I struggle with the constant thought of recurring. 
  • Annie1950
    Annie1950 Peer Support Vol
    @NovaScotiagirl I've come to think of it as a chronic disease, something that I can hopefully manage and with that my anxiety has decreased.  The number of people that I've noticed posting long disease free periods and others posting successful second and third chemo treatments gives me hope for many years to come.  

    I was diagnosed in March 2020 and went through a similar treatment plan.  I feel your pain and hope your anxiety diminishes, it's another part of this horrible disease that we can beat!!!  
  • @NovaScotiagirl -  Vicki - I know exactly how you feel. I was diagnosed in January of 2016, Stage 1C Clear Cell - had six rounds of chemo and as of my last check-up was NED. My CA level (at last testing in October) was the lowest it's ever been.

    At first, during my numerous sleepless nights, recurrence was all I thought about. I was also concerned about breast cancer because my mother died from it in 1975. I had genetic testing done and the results showed I don't carry the gene for breast, colon or ovarian cancer (mine was a fluke, apparently). I could  still get one of the other cancers, but  I'm not genetically predisposed to them. That knowledge helped ease my mind. However, the thought is still there, but not as much as it used to be. Every ache or pain, or unusual feeling, I think uh-oh, here we go again.  I think it will always be in the back of my mind, but it had definitely lessened in the last five years. And I worry before each check up appointment - I only have two left - one at the end of April and in October.

    Do your best to keep healthy, exercise, eat foods that nourish the body. Try yoga and relaxation techniques, maintain a positive attitude and laugh. Get creative with a hobby that brings you pleasure and allows you to escape for a while. COVID doesn't help the situation right now, but Nova Scotia has been faring much better than Ontario where I live. My husband and I are hoping to get out to the East Coast for another holiday whenever life gets back to normal.

    Glad you found OV Dialogue - this is the place to ask questions, get support or vent. We've all been in your shoes and know what you are experiencing. Stay strong!
  • Thank you Annie1950 and kastoyles,  I have been sewing up a storm to help with anxiety.  I had genetic testing and I don't  arry BRCA 1 or 2 gene.  No idea why my cells mutated.  My abdomen still feels very full.  I have discovered that I have a large hernia that o cured after surgery and this could be the reason.  
    Thank you for responding.  I am hopeful for  long happy life.  I was diagnosed when I  was 61.
  • Marissa
    edited April 2021
    Hello, I have been diagnosed with staqe 3 A 2 clear cells ovarian cancer in December 2020. I have the same ovarian cancer than @cbot, we both had the same diagnostic. Has any of you heard form @cbot since December 2020??? Or do you know women who have clear cells ovarian cancer stage 3 or 4???
  • Hello all,
    I've tried to type questions into some  discussion headings but I'm not sure who is seeing it. This post seems to have more members so I'll just try here.  

    I had some questions about what happens with recurrence and what others experience has been with it, specifically where a recurrence happened and what treatment was received, and how you're doing afterwards.   I am asking on behalf of my mom, she just was told of a 1st recurrence.  Trying to understand it and find a positive way forward.

    Thanks for taking the time to respond.
  • Hi Vicki @NovaScotiagirl Welcome to our community.  I'm glad you found our group.....close to 800 strong now, all OVC survivors, and from across Canada.  I'm so sorry you have had to battle this disease too. None of us deserve this but if there is a time in history that I can truly say you're in good hands, its the past couple of years. Thanks to groups like Ovarian Canada, awareness of our disease, the challenges we face are increasing, as is the funding for research and development of new treatments. We are truly living longer and better lives these days.

    But I an assure you your concern is shared by everyone in our community.  Fear of recurrence is the most common cause of anxiety and distress for OVC survivors as they transition out of treatment and into recovery and surveillance.  And that is even experienced by survivors of 20 and 30 years that I know personally, although not as frequent.  It tends to be due to a couple of factors. The first is the intense surveillance and activity you're under when in treatment that somewhat disappears post treatment since appointments are spread out and generally tests are not conducted unless something signals it's warranted to investigate further.  The bigger reason is the lack of understanding of symptoms to watch for and that feeling that the onus is on you to be able to distinguish normal issues from those that might be indicators of a recurrence. Until such time as there is reliable tests, there's not much else we can do but to know our bodies better and educate ourselves on the signs to watch for. 

    There is great information on the OCC website to help educate you. This forum is always available to reach out to members for advice and experience. We do hold a  weekly live chat on Thursdays at 1pm EST to get immediate feedback...but we also love to share and celebrate successes. 

    But do rest assured not all of us recur.  As mentioned my own support group out where I live is populated about a quarter by members free of cancer from anywhere from 5 years to 30 years.  Myself, yes I recurred after a year and a half, and then again after two years and currently in treatment for that most recent recurrence and doing very well.  But I am high grade serous 3C and despite the statistics they show I've already beaten the survival odds as I do into my fifth year living with the disease...and quite well I might add.  If I can offer any advice, don't let fear keep you from moving forward with life.  Just be sure you are educated, you have ongoing open lines of communication with your medical team and some regular series of consults (with or without testing) to stay on top of things. 

    Wishing you much success in your recovery and stay in touch and let us know how you're doing and what we can help with anytime you feel the need to reach out to those who get it.  Big virtual hugs to you,

    Fearless (aka Kathi)

  • @Lucy
    Yes, your discussion threads are seen. So far no responses but it's been a long weekend and not a lot of traffic on the site other than me LOL.  

    I'm sorry to hear your mother may be facing a recurrence.  I remember how I felt the first time....afraid, unsure, ill equipped, angry, sad...the gammut of emotions to deal with.  But that was over two years ago and when I look back I was far more resilient and equipped than I thought I was.  

    The first thing I'll direct you to, if you haven't got it already, is the Ovarian Cancer Canada guide Still By Your Side. It's for the audience of those who are anticipating or undergoing recurrence.  Lots of information there to help guide you through the process. You can order it hard and soft copy at : The OCC site also has a significant amount of information on treatments, stories of other survivors as they've gone through treatment and does this site.  If you go to the search bar on the upper right of the screen and type in key words you may be able to search out some information that may be helpful. 

    I am tagging one of two of our  members, @Readersmaven and @BeamBlossom both of whom have had lymph node issues this past year and might be able to share some experience with you and your mother.  But you can also find some of their stories by typing Lymph Nodes into the search bar.  

    As for experience with recurrence that's a very broad subject.  We all have differing diagnoses. Recurrence can occur in many different forms. And treatments are no longer just standard protocols. There are many clinical trials out here now, new drugs available.  What I can tell you, as I tell others, is that this is a time where there has been so much advancement in treatment for our disease. Some of us get cured. Some of us don't and face living with the disease for the rest of our lives, but today with advancements we are living longer and better lives than ever before. I am in my fifth year of treatment now, having had two recurrences since my diagnosis in 2017 and actually feel better today than I have in the last 10 years and right now I'm just at the tail end of new chemo regime.  

    My best advice to you and your mom...arm yourself with information, much of which you can find on the OCC website. Prepare yourself with the questions you have for your medical consults and don't let up until you get the answers you need, and rely on your medical team for their expertise keeping an  open communication line with them. 

    We do have a live chat every Thursday if you or your mom feel the need for immediate exchange of information or support.  Love to have you join us anytime.  We start at 1PM EST and you enter the live chat by signing in to OVD and then just clicking on the topic  Teal Thursdays......

    I hope this helps and wish your mother all the best...she'll find herself much more resilient than you think.  

    Big hugs to you both....

  • Thank you Fearless,  I appreciate your information,  and you do feel alone after treatment,   I have a good medical team. It is the unanswered questions that cause the mental battle.  I hope you continue to win against our common field.